CBB Exclusive: Scott and Renee Baio open up about Bailey's health scare, Part 2

Yesterday, actor Scott Baio celebrated his first official Fathers Day. While it would be momentous in any context, for Scott and wife ReneeBaio each day spent with their 7-month-old daughter Bailey DeLuca is viewed as a blessing. On Friday we told you about how, in the weeks and months after Bailey’s birth, the Baios lived with the uncertainty of not knowing whether their daughter was afflicted with a potentially deadly metabolic disorder known as GA-1. Though their prayers were answered when doctors conclusively determined that Bailey is in perfect health, the ordeal has had lasting implications for them both.

Click ‘continue reading’ to learn why the test for GA-1 yields so many false positive results, to hear how Bailey’s health scare has changed the Baios outlook on life and to learn about their plans to help others.

Although Bailey doesn’t have the disorder it’s possible that she carries the gene for GA-1, which could explain her initial positive blood tests on the ENBS. Dr. Stephen Cederbaum, who treated Bailey at UCLA, says that "inherent human variation" is more often the culprit. Testing for GA-1 is difficult in that the cutoff range for a normal result is set in such a way to ensure that all actual cases of GA-1 are quickly captured. Consequently the test "inevitably generates false positives, sometimes as many as 25 for every one real case," Dr. Cederbaum noted, citing studies from South Carolina. He added,

With more experience we may be able to revise the criteria and generate fewer false positives in the future.

While she may never know exactly why her daughter’s test yielded the results it did, Renee — who lost Bailey’s twin at 11-weeks — says that she no longer tortures herself with the question of why she miscarried. She suspects Bailey is a carrier of the gene, and as a result, said that finding out about GA-1 has brought her a sense of closure.

Three days before Christmas I was laying down with Bailey in the afternoon, sleeping with her, and I don’t know if it was a dream or if something just came to me, but whatever it was told me that the other baby had GA-1, and that’s why God took her. Maybe she was a carrier. Maybe Bailey just needed to go through this, because it was God’s way of letting us know what happened to our other baby.

For Scott, living in limbo for so many weeks has left him with a newfound appreciation for life.

It was a horrible thing, but honestly, in a way I’m glad I went through it. Because this sort of thing puts everything else in perspective. Throughout the course of normal life, you forget what’s important, and you just seem to lose track of things. I still am guilty of doing that. But every time I think about it, when I think about [Bailey] possibly being not well, I think ‘Screw everything else.’ Every night before I go to bed I thank God, I thank God almost every half-hour that she’s okay.

That the ENBS is not mandated in all states is a huge concern for the Baios. (For a map that gives detailed information on what newborns are screened for state-by-state, click here.) To that end, they’re working to establish the ‘Bailey Baio Angel Foundation’ to draw attention to the issue, and to eventually disseminate funding to families affected by GA-1. While the disorder has no cure, it is treatable — but insurance often fails to cover the associated costs. This leaves families on their own in their efforts to ward off metabolic crises every day, whether it is through dietary restrictions, vitamin and mineral supplements, or other methods.

One such family that the Baios are trying to help is that of 5-year-old Lily Rodrigues. Born in Colorado, Lily was administered the standard newborn screening test immediately after her birth — but not of the expanded variety, like that offered in California. As such, doctors were unaware that she was in fact afflicted with GA-1; After a metabolic crisis in 2004, she was left with irreversible brain damage. That her condition could have been detected — and her injuries could have been avoided — had her mother only been offered the ENBS at an additional cost of $25 is heartbreaking for the Baios. That’s why they’re financing a trip for Lily’s mom to the 2008 FOD/OAA National Metabolic Conference in Pittsburgh, PA next month.

The Baios insist that it is only the beginning of their charitable efforts to bring awareness of GA-1 and the need for ENBS. As they work to get their foundation squared away, they’ve been posting updates about their progress on their MySpace. Says Renee,

The first 10-weeks of Bailey’s life changed our lives forever. Forever. And we get it. We know we need to be a voice here, and that’s what we’re trying to do.

Thank heavens that little Bailey is OK! I appreciate this couple for what they are doing and for their new outlook on life. Thanks for sharing your story, Scott and Renee!

Allison
on June 16th, 2008

Wow. The Baio’s are truly amazing parents. What a wonderful thing they are doing to help others. They could have kept their pain private, but they decided to share their story with the world so that other families can be helped. I hope, through their efforts, that every state is mandated to test babies with the ENBS.

Jen
on June 16th, 2008

I am greatful the Baios brought this out to the public and I now want to learn more about it so I can know everything I can. Bailey is a doll too.

I can definitely say that having the Baio’s help with ENBS is going to make a big difference. When Lily first got sick, I knew nothing about the screening. As time went by and I learned that her condition could have been found and her disability prevented, I was devastated. However, it seems our experience is like that of the Baio’s – we learned there was a purpose and we wanted to help other families. Today, Lily is 5. She endures many hospital visits, Doctor visits, and illness – but is loved and encouraged by SO many. She is a trooper and a blessing.
My heartfelt thanks to the Baio’s for what they are doing for my family, and soon for other families effected by GA-1.
Lily’s website by the way, if you want to visit, is http://www.thelilyfoundation.org
God Bless!

Bailey is so beautiful, so glad she is ok. The Baios are amazing parents and great caring people.

M, from Las Vegas
on June 16th, 2008

Thanks for the update on the Baio Family! Too bad their myspace page is set to private, because I wanted to learn more (and I don’t have a m.s. page). I am glad Bailey is healthy & I wish their family all the best!

Allison
on June 16th, 2008

I must say, after watching their show, I think Renee has made a wonderful impact on Scott. They both seem so in love and they are obviously wonderful parents. I am so glad that little Bailey is OK. Thanks for your story Scott and Renee!!

Adriamarie Arboleda
on June 16th, 2008

I am a New Grandparent at 40yrs old and I just adore My Grandaughter more then anything in this world and when I read the story about Scott (whom I grew up watching on TV) I cryed also. That is a lot to go threw for a Baby and Parents. I am the Family member who right now has inherited everything from Diabetes to Spinal Stenosis to Thyroid to Heart Diease and I hope My Grandaughter lives a Healthy life as I continue to let her Dr know what happens throughout mine so that the cycle doesn’t happen to her, as giving blood and all those test are even hard for an adult. Love and Support is What I see the Baio’s giving there Gift from God and they are so Blessed. I have donated in My Grandaughters Name and I wish the Best to anyone who has gone though anything and will go through any Problems with there Little Ones as they are so very Precious. Thank You for letting me Share.
Take care
Adriamarie

Heather
on June 16th, 2008

To Lily’s mom: you all deserve a ton of credit and Lily is a little warrior. It’s great that the Baios can help bring more awareness to something you all have been battling for so many years. My prayers and thoughts go out to you and your family.

I’m so glad that the Baio’s little daughter is doing well. She is a beautiful darling. I’m also so happy that Scott has a newfound appreciation for life and for looking to God with gratitude and humility. Unfortuately, most of us have to go through something like this to be able to say “I get it, God, thank you and I’m so sorry for not getting it before.”

I wish the Baios every happiness, enjoying their wonderful baby girl and thanking God everyday in every way.

Blessings always,
Lisa

Michelle... with PKU
on July 7th, 2008

I have a metabolic disorder, Phenylketonuria, similar to GA-1 where my body can not break down any protein at all. I know what they went through from the stories my mother has told me… they called her when I was 7 days old and told her to stop feeding me! They are strong family and I can promise you, a lucky family… because it is very hard growing up knowing you could have been mentally disabled. I wish them the best of luck, and am so grateful of their outreach. Metabolic disorders have not been brought to the public eye before and maybe this is what we need to get the ball rolling on research. I’ve taken part in many studies, but never have any been very successful. I am 22 years old now, with a Bachelor’s degree and hope that someday I can make a contribution to other children and adults who struggling with these disorders. It’s just not fair…

Please research metabolic disorders… Phenylketonuria, GA-1, Maple Syrup Urine Disease, and so many more. We are few and far between… but we are out there… and any support could help to finding a treatment… or even a cure!

rhonda winner-dodzweit
on July 10th, 2008

Wow! I heard about the Baio’s story right after I just went through the same experience with our newborn son Nicholson. He was born on May 19th in New York state. He was 9 days old when I received the phone call from my pediatricians office informing me that he tested positive on the newborn screening for GA-1. This was devastating
news. We waited for one dreadful week to find out the results from the metabolic specialist. We were so blessed to find out that it was more than likely a false positve result. The metabolic specialist up in Syracuse, NY will also be doing a DNA test on Nicholson soon. This experience has been traumatic for my entire family. God bless any one who has this disorder and any family who has to go through such an experience as we have. We truly understand what the Baio’s went through and I have a ton more empathy for the families of the children I work with.
We are grateful that New York state screens for 45 different disorders however false positive results create extreme anxiety in the newborns parents and this needs to be looked at more closely. Support is needed for families that experience this.
We commend the Baio’s for their dedication.
Respectfully,
Rhonda Winner-Dodzweit,(mother of 2 young boys, and therapist for infants and toddlers with disabilities for the past 15 years)

Shane
on July 28th, 2008

I would like to say i am thankful that Bailey does not have this terrible disorder. My son who is now 13 was diagnosed with GA1 at 6 months. He has been fighting for his life this whole time. Because of lack of testing at his birth he has suffered severe brain damage and numerous life threatening hospital stays. If anyone knows how to contact Scott about his foundation please let me know. Myself and my wife would love to help in any way possible. To help other families with our knowledge and contacts.

Thank You

rhonda winner-dodzweit
on August 3rd, 2008

Shane. I would like it if your wife would email me. I wrote the comment before you did. I am interested in talking to or emailing your family to talk about your experiences with this disorder. My son Nic had the DNA test last week and now we have to wait 4-6 weeks for the results. Please email me at rhondawd@aol.com

Respectfully,
Rhonda

Allison
on August 10th, 2008

I am so glad that she is okay, GA1 is a serious and rare disorder, especially if not detected early. There is another form, GA2, that is even more rare. As I am typing this I am sitting next to the hospital bed of my 26 year old fiancee who is living with GA2. To this day, he sees a pediatric specialist because there few (if any?) adults living with GA2. We searched for years for this specialist and did not find one until March of 2008 (we could not find a Dr. willing to help us find a specialist so we were on our own). Please visit: http://www.glutaricacidemia.org/ This is a wonderful non-profit research and support group. Without their help we would have never found the specialist who is helping diagnose my fiancee with DNA testing and creating a protocol for future hospital visits. This Dr. (Dr. Ahmad at the University of Michigan) was the first Dr. to ever tell us about GA2, instead of us telling them about it. There is so much to be learned and as scary as this ordeal must have been for the Baios and I am so glad they have brought some public awareness to Organic Acidemias. Thank you for sharing your story and may it help others detect these disorders early, but also understand that they are not alone. It is easy to forget, especially when we are constantly “fighting” with hospital Dr.’s who have never heard of this condition and want to try their own way of treating it, instead of listening to us and doing what has worked in the past. The lack of awareness among the medical profession can be more frustrating than living with the disorder itself.